Last weekend, when Lee came back from being away, we took the children out for dinner. I can't remember the last time we all went out for dinner to a proper restaurant. It was quite a few months ago that's for sure. We took them to a chinese buffet. We know what the boys can/can't eat, we have investigated previously, and they love it. It was so nice to have a 'normal' family dinner out. No drama, no meltdowns, just smiles all round. The stress of getting everyone ready was definitely worth it!
Ayden, with Sushi!
We are about to embark on what is quite possibly going to be the most productive, and most important week of the year, and it's difficult to know how to approach the week. 4 days of the week will be spent at Great Ormond Street Hospital with various children.
Tomorrow, Monday, we are heading to GOSH (Great Ormond Street Hospital) for an appointment with the Gastroenterologist with Ayden and Cameron. Normally Katrina comes with us and has the day off of school, but she is getting older now, and spending a day at the hospital really isn't something she wants to do. The problem with this is that the appointment is not until 420pm. So a decision had to be made. Katrina, being 9, knows what she does and doesn't want to do, and we had two options. Do I enforce my parental right to tell her what to do, and deal with a stroppy, annoyed, bored, tired, more than likely screaming 9 year old, while stressing about TPN lines, and connecting TPN and feed, and making sure we don't lose a child. OK, so it doesn't sound particularly appealing, or, do I bite the bullet and ask someone to help. Asking people to help me out is not something that comes naturally, and I hate it. I chose to have 4 children, I should be able to look after them myself without help from anyone. I know what people are going to say, I didn't choose to have children with additional needs and I didn't chose to spend half my life in a hospital. It's ok to ask for help, it's not admitting failure. I have heard it all before, and yet, it doesn't change how I feel. Katrina also didn't ask to have 3 brothers who have additional needs, nor did she sign up for spending hours and hours at a hospital. So I bit the bullet, and I text one of her friend's parents. It felt horrible. I had to ask someone to help me, with Katrina. I did it, and she said yes. So, I will take Katrina to school tomorrow, and I won't see her again until after school on Tuesday. She is having her first EVER sleep over at a school friends house. I know she will have a whale of a time. While thinking about the fact my little girl is growing up (buying her shoes from the adult section was a bit uncomfortable!) I also have to remember that she is a lot more grown up than most children due to the situation she has been thrown into. It is difficult sometimes to know where the balance between being a 9 year old girl, and being a 9 year old girl who has seen the things she has seen, who knows more about drainage bags and feed pumps and TPN sets than 99% of other 9 year olds. So, she is having a sleep over. I know she is looking forward to it, and I know she will be fine, and I also have thought about how important it is for her to go to her friends on Monday. So she can see what other 9 year olds do, and how other families work. It is important for her to have some time to be Katrina, and not 'Rowan's sister'. She does do this quite frequently, she goes to young carers (but she is there because of Rowan and knows this is why) and she goes to Brownies. Brownies is important for her because it's a 'normal' activity, it's a group of girls, where at home it's mainly boys. She gets to be Katrina, her brothers can NEVER go to brownies, it will always be her thing. Today she has gone to Warwick Castle with Brownies, and I am so grateful to Brown Owl, she lives in the same street as us, and ferries Katrina wherever she needs to go. So Katrina goes on ALL of the trips that are offered to her. Going to her friends for a sleep over is just another step of 'normal' for her.
Speaking of 'normal' activites, Cameron went to his second ever birthday party last weekend. It was the first fancy dress party we have ever done, and I have to say I believe it was a success. It was a 'Western' Party, so cowboy outfit it was. It sounded like he had an amazing time. He certainly looked good, and surprisingly, being dressed as a cowboy really suited Cameron! At the age of nearly 7, I have begun to realise that he too needs to start taking a little bit of responsibility for his own health. So, for the last 4 years or so, we have been
conditioning brainwashing teaching him what he can and can't eat and why. It hasn't been until recently that I have realised how much Cameron's diet controls his life. We have to be careful where we eat, what we eat, it controls where we can go on a day trip, or if we can go on a day trip at all, and as we have 3 of them, we just kind of fell into a comfort zone. Now that Cameron is almost 7 we are having to move out of that comfort zone. I am having to let go a little bit. I have to trust him. So, I sent him to the party, with his own food, with strict instructions to ONLY eat what is in his lunchbox. Which, as far as I am aware, he did. And to top it, he sorted through his party bag, what he could have, and what he couldn't and what he needed to ask me about. The next stage is to let him go to a friends to play. Cameron is itching to go to his friends houses to play. We have always said no. Not only do I not like talking to other parents, I don't like having to almost tell them how to look after my child. I don't really trust other people with my children. Especially when feeding him the wrong thing, even just a tiny bit, can make him so poorly. So for these reasons I have either just put it off, or said straight no. However, he is 7, he is showing me he can make good choices, and can look after himself a little bit. So, the next step is to let him go to his friends houses.
And so, while trying to get my children to have little bits of 'normality' there is always the constant at home which is far away from normal. I don't know why, but I have a real issue with admitting that this is how we are as a family. I want to be 'normal' I want to appear 'normal'. I don't want to attract attention, I don't like having to ask people for help, I don't like having to rely on benefits from the government for my children, I don't like being different, and I don't like being talking about, or stared at, or pointed to. And more than that, I don't like my children being treated differently, pointed to, or stared at. They have enough in their lives. I want to be normal, and I am finding it very difficult to come to terms with the fact that our normal and your normal are so very different. Our occupational therapist came out to see us this week. And we should be getting a banister for Rowan on our stairs, that is at his height, so that he can learn to go up and down the stairs by himself. We have bought a set of step ladders so that he can reach the sink to wash his hands and brush his teeth. The OT is getting him a chair so that he can sit better at the table with his brothers and sister (ok she called it a highchair which I feel needs to be changed, as highchairs are for babies!). Everyone else is also hell bent on us looking and functioning like a normal family. We aren't normal, and I can say that, but I don't feel that.
So back to this coming week. Monday we are at GOSH to see the Gastroenterologist with Cameron and Ayden. While I am sure that this appointment will just be a routine check and all will be fine, and possibly another short course of steroids for Cameron, you never can be sure. This will be the first appointment at GOSH for just Cameron and Ayden. It always used to have Rowan thrown in there too, but Rowan now has a different gastroenterologist to Cameron and Ayden. Rowan will be physically with us, and no doubt the consultant will comment on how AMAZING he looks, and grin the whole way through the appointment knowing that he saved Rowan (and rightly so!). However the focus will be on Cameron and Ayden. You never can be sure that out of nowhere they will land you with another test they want to do, or repeat scopes, or try xyz. How about we refer to so and so and see what they think. Part of me wants this to be an uneventful, boring, 'yes everything is fine, but here is your prescription, please now wait over an hour at pharmacy for your little prednisolone tablets' and part of me thinks, now that Rowan is stable and the focus is off of him, that maybe we should be investigating a bit more, moving forward. Maybe we ARE forward, and that's fine, and maybe I can be told that tomorrow. Over the years of dealing with constant medical problems, I have learnt while it's good to have expectations, don't get hung up on them, because they aren't always met. Set the bar low, and then you aren't disappointed. Expect the unexpected. I don't have a 'mission' for this appointment, unlike when I go for appointments for Rowan. So, instead, I am 'expecting' to have a fairly uneventful day with my boys (Katrina is at her friends remember) in London, maybe going somewhere nice for lunch, maybe making a picnic lunch and having it at the park behind GOSH, while letting the boys play in the park.
Once that is over, we have a whole 24 hours at home, before we are back to GOSH again. For Rowan. Rowan is being admitted to GOSH, Weds-Fri. He will be under the Endocrine Team, which, for those who know the politics of GOSH, will know this fills me with much more confidence than when we are admitted under the Gastro team. So, what is he going for? Basically we have had a few problems with Rowan's blood sugar levels when he is coming off of his TPN. We manage them ok, and it's not hugely dangerous, but it's also not ideal. And while they remain manageable, the Endocrine team need to make sure there isn't another problem arising that we haven't accounted for or possibly predicted. So, he is going in for what is known in the endocrine world as a 'profile and fast'. Basically, they will test Rowan's blood sugars every hour for 24 hours. Then, once that is over, they will 'fast' him. So, no breakfast (which is key to keeping up his blood sugars as it's loaded with carbohydrates, a trick we learnt quite quickly with Rowan), no juice, no water, no milk feed, no tpn, no nothing. Rowan NEVER goes without anything. And we see how long he manages before his blood sugars drop. In an ideal world, they won't drop and all will be well. In reality, without the carbs his body will be expecting, his blood sugar will drop. It's a complicated process to those who have no idea what I am talking about, but the aim is to make sure that Rowan stays as safe as possible, and we spot any new problems as quickly as possible and start to treat them. Blood sugar levels are very important, blood sugar levels that are too low are dangerous, as are those that are too high. The first year of Rowan's life no one checked his blood sugar level. Never. In hindsight it was blatantly obvious that, with the nutritional state he was in (or not in!) blood sugars should have been checked. It wasn't until he was 14 months old that I noticed he had a problem. While being reassured that a blood sugar of 2.2 while on normal saline wasn't great but it would be fixed by 5% dextrose and was quite normal, I knew no better, and was kept in the dark about blood sugars. It wasn't until we were admitted to GOSH on an emergency visit, that I was told that 2.2 on saline was NOT ok. We walked through the doors, with a nurse from our local hospital. He was on 10% dextrose, and they kept him on that all the way there in the ambulance. We arrived on the ward, and his blood sugar was checked, and it was 2.1. The nurse RAN and started putting some gel in Rowan's mouth. I now know that is called hypostop, and it's a 'quick fix' for low blood sugars, but while it doesn't contain carbohydrates (which are used to maintain the blood sugar) he was yoyo-ing. So he'd go from 2.1, up to 6.4, back down to 2.3 within an hour. As soon as we were able to feed him his milk again he was ok. No one mentioned sugars again.
On another trip to GOSH, it was noticed that Rowan was VERY sleepy. Something most people but down to him being so underweight and so tiny, that he had no energy. A nurse did a blood sugar on Rowan, just to make sure he was ok, and it was 1.9 (a normal range is 4-7, although Rowan is allowed to go between 3.5 and 10 before he requires intervention) that nurse got Rowan some IV fluids. From there we were advised to 'spot check' Rowan's blood sugars and nothing else was mentioned. It was sent in a letter to our local hospital and we were supplied with a blood glucose monitoring machine (the same as they use for diabetics) and asked to check his blood sugars every 4 hours, and for the first week note them on a chart. I did this, and sent it to the hospital (at this point, I still was unsure what was 'ok' and what wasn't) the sugars ranged from 1.7 up to 3.8. I was told it was ok, as he was so underweight, that was to be expected. I accepted that as fine. Why wouldn't I? Then we were admitted to GOSH for our long stay (the 8 month one) and people all of a sudden started doing hourly blood sugars. Yes, my little boy, 9lb 12oz at 18 months old, had a blood sugar checked every hour of every day for 8 months. And the results were shocking. As soon as Rowan had his central line put it, and TPN was started, it was noted very quickly that he needs a LOT of sugar. He actually has the equivalent of 22 1/2% dextrose in his TPN. To put that into perspective, you can not run anything higher that 10% dextrose through a cannula (the needly they put in the back of your hand in hospital if you are dehydrated). Most people only need saline, or a little bit of sugar, 5%. Rowan has 22 1/2% dextrose EVERY day. This now means that he is completely dependant on his central line. If his Hickman line is broken, or we aren't allowed to use it, our options are VERY limited. We have a plan for if this happens. (I like to say if, but in reality it's when, I know we are extremely lucky that in the 18 months Rowan has had a central line we have NEVER had one break or block). If we just put a cannula in Rowan, and run 10% dextrose, his blood sugars won't take long to crash. There are two main things that can happen with blood sugars that are too low, one is a coma, the other is brain damage. So, Rowan's emergency plan consists of another kind of line that would be extremely temporary. We also don't know if the low blood sugars Rowan had for the first 2 years of his life, have actually caused some brain damange. At the moment all seems to be Okish but you never know. So, because of this with Rowan, we just have to keep an eye on him.
So the stay sounds fairly simple and straight forward doesn't it? And that bit does. It's everything else that goes with it. We will get a Gastro review, and I get to ask any gastro related questions. This is so that I don't have to go back in a couple of weeks for clinic, as we are there anyway while not kill two birds with one stone. And that makes sense until you factor in that EVERYONE has the same idea. So physio will come and do a review, and gastro, the endocrine tests will be going on, we also will meet the pain team for the first time, we will see CNS nurses, and I know that a metabolic review and a genetic review is also being requested, and no doubt they will also think 'why not kill two birds with one stone'. So, the 3 days that we are at GOSH, I am thinking of operating a ticket system, you know, like you have in clarks, everyone takes a ticket and waits for their number to be called? It will be a full on 3 days, if you factor in a hungry, thirsty, grumpy 3 year old as well. I have 3 'missions' for this hospital stay though. One is to actually get out on Friday. Two is to get some proper advice about Rowan's physio exercises, and ask lots of questions and get some answers so I know what I am doing, and also get a leg to stand on when I am arguing with other professionals. And the third, and most important, is to get something for Rowan's leg pains (which appear to be progressing to back pain as well now).
So, it will be a productive and full on 3 days. In the middle of all this I have my mental health struggles. I always struggle with hospital stays. Usually I am slightly better at GOSH, because we are on our usual ward, with usual nurses, I know where everything is, I know how to get what I want, or where to get it, I trust the nurses enough to leave Rowan. It's my comfort zone. It had to be, I spent 8 months there!! These 3 days, we are NOT staying on that ward. It's on another ward. And while I know it and have been there for day-case things, I am not looking forward to going. I don't know the nurses, they don't know me, they don't know Rowan. I have little ways to cope with hospital stays that our 'normal' ward know, if Mum is in a foul mood, keep the door shut and leave her alone, or bring coffee and toast. I suppose I have been spoilt. So I am going to have to talk to people I don't know (while trying to figure out if they are real or not) and ask for help, and things I need (which I hate). And to top it, I was told last week that I may not (ok probably will not) get a cubicle. The ward only has 2 cubicles. And if there are 2 other children that are possibly maybe infected, they will get those cubicles (understandably). Usually we have a cubicle because you are not allowed to connect TPN in an open space with other children running around. However, this ward has a room now where you can connect the TPN, enabling them to put TPN patients in a bay. (A room consisting of more than one child and parent). The bays on this ward have 6 beds in, with 6 chairs for parents. 5 other screaming children, 5 other parents (which may be Dad's as well as Mum's) 5 other families, which often means a ton of visitors, lots of traffic, lots of people looking and just generally talking. It will be loud and hot, and busy, I will have no privacy, no personal space, nowhere I can just shut the door if it's all too much. No where I can just sit and cry if I need to. I don't trust the nurses because I don't know them. I don't know when these doctors are coming, which days, which order, and we all know sod's law says that the minute I need a break and a caffeine fix the doctors will arrive. It's not the 4 hours I have been waiting for them, it's the 10 minutes when I nip to get a coffee. Rowan will be SCREAMING as he will be hungry, and thirsty and hot, so that's 5 other parents tutting, and wishing you'd shut your child up.
Can you see why I'm dreading it? Is it a situation you'd choose to be in? So yes, I have spoken to my mental health team about getting some diazepam. Losing my temper is not pretty, I have a sharp tongue and I am unable to control my language when I lose it. I lash out, and can be downright nasty. It's not a situation I want to be in, for me, or for anyone else. So I have to think about these things, plan ahead, and think it through. It's going to be a rough 3 days in so many ways. But it's also necessary for Rowan. Rowan's needs come first always, so while I am stressing and having panic attacks and biting my lip trying to breathe my way through the day, I have to advocate for Rowan, and get him what he deserves. This is why I have 'missions' if I can, so that it sort of gives me something to focus on. Sometimes it works, sometimes it doesn't. Fingers crossed Rowan gets a cubicle!
No doubt I will blog again next weekend about the weeks events. See you on the other side!